Hope Deferred Makes the Heart Sick

Last week was seriously busy with meetings tests and new ideas. It was really overwhelming.  Here's a quick update.  Apologies to my grammar junky friends. I wish I had the time to be a good writer but I'll have to settle for just getting it on virtual paper.

It all started with the care conference with Micah's doctors and other specialists on his team early in the week. Here's what we talked about in that conference:

• Micah's most recent CT scan it appeared to show his left lung was not getting the blood flow that it should so the team wanted a nuclear scan of his lungs to get a better picture of the blood flow on both sides of his lungs. 
• This was important because there has been discussion by his otolaryngologist about trying to open the left main stem to increase Micah's access to that lung which is basically almost completely shut down due to the main airway being narrowed at the top. There's a few ways they could do that:
•  Putting a stent in that upper left bronchus might hold that airway more open than it is now but means Micah would have to agree to putting in the trach which you can read about in my previous post. Both the stent and the trach introduce new opportunities for infection on a regular basis.  There's also the risk that because the airway is already so narrow and the stent has its own thickness perhaps the scarring wouldn't allow the stent to stay in place.  It could shift.  Or the additional scarring could grow up around the stent making the airway worse not better. Not a small thing to decide.
• Using special tubing and a balloon to go in and stretch that narrowed area. But the scarring is pretty severe and very stubborn. The risk here is that the area could tear causing irreparable damage to his airway which would be fatal. 
• Going in with the laser to try and cut away some of the scarring to open up that airway. I'm sure you can figure out all on your own how dangerous it is to put a laser inside of an airway. One wrong move and the laser could cut right through the airway wall and believe it or not there's also the potential for the patient to catch on fire. (Terrifying.)

• That said if the nuclear scan shows the blood flow is inadequate to the left lung, opening up that airway could cause more problems that it would solve. The demand for blood which had never been there before would be too great and would create another set of problems.

Some of the other interventions were more basic and less scary.

• Micah has diverticula in his windpipe (potentially dangerous but stable thank God) which they've determined have worsened somewhat overtime and this could be the source of some of his pain. They decided it was time to bring in the pain team to help Micah manage his pain better for the long term rather than Band-Aiding with short-term pain management. (Finally!) I didn't even know there was a pain team. 
• Anxiety has been a real ongoing issue and rightly so. Imagine feeling air hungry all the time. They decided to consult with psychology to see if there were some better solutions for Micah.

RESULTS

The Bad: The nuclear scan came back showing Micah's left lung has only 18% of the blood flow it should have.  The Otolaryngologist consulted with his colleagues in Cincinnati and it was unanimous.  There are no surgical options left for Micah at this point. This was a real blow to Micah and he took it very hard.  Opening up that airway could have made a big difference in how he feels every day and he was holding out a lot of hope for what that could mean.  I'm sure it felt like all the hope was suddenly taken from him.  This is as good as it gets. I can tell you as his Mom I've never seen him so low or angry.  He's not an angry guy - if you know Micah you know that.  But this was more than he was able to bear.

The Good: Psychology and the pain team definitely had some ideas.  Some adjustments were made to anxiety medications that deal with air hunger and a new longer acting pain medication was prescribed.  So while Micah grappled with the bad news about any operative solutions for his lungs the new medications were kicking in.  By the end of last week Micah was no longer asking for additional meds for break-thru pain and/or anxiety. He was starting to spend more time off the bi-pap machine and on regular oxygen from the tank and for a few minutes here and there - off the O2 entirely.  He started getting out of bed more, going for longer walks and doing more things for himself.  It has made a significant difference in his day to day which has in turn had a very positive affect on his attitude.

And Now: Micah came home last Friday and is doing so much better than he has in months!  He's helping with his own meds, and coming out of his room to eat at the table and even went out to a movie with his Dad, brothers and myself followed by dinner out!  He was pretty worn out by the end of it but he made it and he felt good about it.  Next Sunday we're going to give church a try.  He hasn't been able to go in a LONG time.

What's Next:  At home Physical Therapy and Occupational Therapy, on-site Pulmonology Therapy (specialized bikes and tread climbers, etc with respiratory support) and hopefully - avoid illness!  Micah's room is quite small and barely contains all his medical equipment and our house doesn't have the extra space needed for optimum physical therapy.  Keeping Micah strong will mean doing the work every day and involves more than therapy.  It means having space to play guitar and rekindle friendships.  We're looking to add a room to our house especially designed for Micah's needs so we're going to be starting a campaign to raise the money, donated labor and materials to get it done as soon as we can.  So far the plan is working and he's getting stronger than he has been all Summer and we want to make sure he has every opportunity to make the most of the time he has left.

Thank you everyone for your prayers and support.  We are confident that your prayers have made all the difference.

POST CT SCAN UPDATE:

Micah did great. We don't know the results yet - or even if they got the pictures they need to determine if Micah is a good candidate for a stint in his upper left main bronchus but the experience itself was fairly uneventful. They had all the right supports in place and there were no surprises. So thank you for all your prayers and kind thoughts. As soon as we know more about the results from the scan we'll let you know.  But here's a little info on why this CT Scan is so important:
We (his medical team, Micah, myself and his step-dad) have run out of ideas to improve his lung function and he's been getting increasing worse.  A new doctor was invited to have a look and attempted a procedure meant to try and stretch open the nearly completely shut down left main stem bronchus.  It didn't work well.  His instruments were too rigid and couldn't really get into where they needed to go to get the job done. He agreed to meet with some other colleagues of his and see if any other ideas could be discovered and they were.  There are other more flexible instruments  that may be more effective.  It was also thought that it might be possible to put a stint into that stretched opening to force that airway to stay open.  If so - it could mean improved over all breathing for Micah.  BUT (there's always a but - isn't there) he would have to agree to having a trach placed because the stint would need regular maintenance and easy access to the stint would be needed.  A trach would offer that access.  It could make a big difference for him and how he feels on a day to day basis.  But all of this possibility rests on the mechanics of his upper airway which is already in pretty rough shape and THAT is why he was having a CT today.
At this point this is the last idea on the table that is curative.  Any other efforts at this point are aimed at comfort care.  Some have asked if Micah is eligible for a lung transplant and the answer is no.  His doctors have asked twice and twice been turned down.  It's not the sickest people who get transplants.  It's the sickest people who have the best possible chance of the transplant actually working who get transplants and Micah's disease and physiology make it impossible.  His airway (trachea) is to damaged to accept new lungs and there's no way to know if the new lungs would be damaged by his disease since they have no idea what has caused it in the first place.

I will tell you Micah did have some nice visitors today after his CT.  He felt good for a few minutes and the timing worked out for some Super Heroes to stop by at that time.  :)  Wonder Woman was jealous of Superman because he could land anywhere and she always has to submit a flight plan - even for her invisible jet.

Micah's next homework assignment is pain management and sleep. They're trying something different and it's on an as needed basis which often means he waits too long to take it ("I don't feel good I should get some meds." Takes 30 minutes to get it and 30 to kick in now I feel like garbage) and he's always chasing the pain instead of staying on top of it. So we've made a chart to help him know when he can ask for it to help him anticipate his needs instead of react to them. And sleep has been elusive. Tonight? Praying for good, restful, sleep.
‪#‎blessings‬!

Turning Point

It's time to pull this blog off the shelf and dust it off.  This summer has marked a turning point for Micah with twists and turns and new challenges so I'd like to start sharing his story again.

 I stopped blogging for lots of reasons mostly time related.  If I made a list of all the things you would be tempted not to believe me.  Mostly, however, Micah leveled off for quite a while and managed to find some independence, a girlfriend, and a home of his own.  I moved to the background as far as his day-to-day care was concerned and with his permission moved on to other projects like my other kids, the Donald Hazelnut Festival board and planning committee member and helping care for my husband's mom who had been diagnosed with dementia.  Those are different stories not meant for this blog.  This blog is about Micah.  So here we go... I'll write as often as I can.

Bumpy Summer / Autumn of Change

Micah was home only a week after his 1 and a half long hospital stay and it was back up to the Emergency room at 2 AM on Tuesday morning.  I had two molars pulled only 12 hours earlier and was a bit distracted with the pain and swelling but we bumbled along because we had to.  He was de-saturating on his home oxygen set up and dipping towards the upper 80's fast.  We spent the night in the ER and the next day in pediatric ICU catching naps in-between the hospital staff visits.
He was moved from ICU Wednesday to the regular floor in Doernbecher and seemed to be tolerating it fairly well. He looked tired and uncomfortable to me much of the day with a few highlights of a fun physical therapy session and a visit from Great Uncle Steve and Great Aunt Diane.
Today is an important CT scan of his upper airway which, for Micah, is less fun then the average CT. He doesn't lay on his back - it's too hard to breathe. So it comes with added anxiety to perform this task.
Today's prayer request:
His CT is scheduled for 1 pm. He needs to have everything go smoothly. No technical difficulties, and competent staff and support staff. It needs to be relatively on time because the not knowing and good timing of anti-anxiety medication really makes it easier.
He needs calm breathing and no coughing during the CT so they get the important images they need the first time.
A sense of peace and safety for Micah.
Then tonight? Sleep. He needs long, uninterrupted sleep.
I thank God for you all and your love, support and faith extended on Micah's behalf.
#blessings

Raw

This post will probably have a lot of 'I' statements in it this time. If you think that might sound selfish and you won't like it you should stop reading and go back to scanning facebook posts about funny cats.  It's OK.  It's what I do when something makes me uncomfortable.  Like posts about my friends' son's birthday who would have been 14 today if not for a terrible accident when he was still very young. I only read the first three words and I burst into tears. Losing a child is the worst and heaviest burden of them all.  I am sure of it.

Even now as I type these words, my hands shake from the effort of trying to contain the powerful emotions that threaten to stop this day in it's tracks.  My son is sick.  It's unlikely he'll die in an accident.  He'll just wake up everyday a little closer to death.  Some days he finds he has taken just a few sidesteps - it doesn't feel closer.  Other days we can clearly see that he took 3 giant steps forward.  There's nothing for it.  It's coming.  Like a fin in the water pointed straight for you and no land in sight.

I cry more now.  Some days are unbearable.  Other days I manage to function like life is "normal". But you have to know most decisions I make are run through the filter of, "Will this interfere with Micah having as much chance at a normal life as I can give him?" I hate it.  I HATE IT. It robs everyone I know and care about. Bethany has to grow up faster.  That's not all bad - but it means less time to attend volleyball games or basketball tournaments. She is often the other Mom around here. It means I can't help build sets for Rebekah's plays or chaperone field trips. It means I can barely pay attention when Herb is trying to tell me about his day. He needs me - and I'm mentally unavailable. Herb's Mom, Lenora, lives with us and she's disappearing from this reality as Alzheimer takes over - I'm running out of time to give her good experiences before the hallucinations are all she has.  Corban is only 3.  He doesn't really understand how much he's not getting but I know. It's like Paul, my first husband all over again.  All the good things were poisoned by his death which was the same shark that stalks my son Micah now. And because of the needs of my littlest son and his Grandmother I can't be with Micah at the hospital as much as I should be supporting him and learning about his care and treatment. He's isolated, unable to visit other patients with mostly only nurses, and RT Specialists as friends. Adults are nice - and can be so kind.  Micah's youth pastor has taken the extra effort to be there for him so much more than I think he has time for.  The music pastor has tried to reach spend time with him but Micah isn't always well enough. But he needs friends. People his own age. Peers. The friends were the first to fall away.  It's always like that with long term illness. But the loneliness is so hard to watch.  I can't fix it.  I'm a mom.  Mom's are great. But a person wants to be loved and missed and pursued  by their peers.  It's what we all want.  I can't make that happen for him.  How does a mom go scrounge up friends for her son?  If you know - please tell me.

Before you jump to conclusions - I know how this sounds.  I can't and shouldn't say any of these things.  In fact I rarely do - even to those closest to me. I only do it now because of how much care people have expressed.  The questions I get asked that I politely answer in as balanced way as I can so I don't lose all my friends who can't deal.  But if Micah hears or sees these things he might get the idea that I resent him or blame him on some level. Which of course is just ridiculous and not true.  But our hearts are so soft and we often perceive our fears as true if there is any evidence, real or imagined, to back it up. But I think people need to know, need to understand the million tiny ways something like this effect every single area of the lives of those attached to it.  Don't you think I want to volunteer to make that casserole or attend that meeting or help in the nursery or be on the worship team? I feel judged but really -  I judge myself. How do I reconcile all these things I think I could and should be doing when the only ministry I am have time for is my own family.  I could help.  But I can't. Be all you can be?  Whatever. I'm trying to shut my ears to the requests that are everywhere.  It's very, very hard. If you have a "normal" family that gets up, goes to school or work, comes home and spends their evenings and weekends however they decide cherish it.  Hug it close and thank God.

In the end all I want is for Micah to have as many chances to squeeze into his shortened life so many of the things we take for granted because we have DECADES for things to happen to us by chance. But life is very demanding and dinner still needs to be made and I really can't put the rest of the family's lives on permanent hold because of this, can I? Should I?

I wish there was a miraculous cure but there isn't
one. So there it is - for those of you who are still reading.  The truth is there is no cure.  They barely understand the disease he has. And a lung transplant is all but ruled out. If he doesn't die suddenly from some kind of massive pneumonia they can't fix then this thing will go just like his Father. Slow - long - the disease will take him to the point where he is bed ridden and on a ventilator and tube fed exclusively because it's too dangerous for him to eat. Until his heart fails.  This is our future. How can I care about anything else? Teachers? Policemen? Politicians? Bosses? Friends?  Debts? How can I care about anything else? There IS nothing else.
I try to redeem anything negative I say or write with something up. But sometimes there just isn't one. I don't need any comments.  Don't feel obligated to cheer me up.  But if you are in a position to do something for someone who is in shark infested water - do it. DO. IT.

 

do

verb (used with object)

1.

to perform (an act, duty, role, etc.): Do nothing until you hear the bell.

2.

to execute (a piece or amount of work): to do a hauling job.

3.

to accomplish; finish; complete: He has already done his homework.

4.

to put forth; exert: Do your best.

5.

to be the cause of (good, harm, credit, etc.); bring about; effect.

The Long Summer

When I first started writing this post it began, "It's been about two months since I've had time to post but it seems much longer."
Well, now it's been three months because that's the kind of Summer it's been. Kind of nuts. Now I'll write what I can off the top of my head because that's all I have time for. So again, I apologize for poor grammar and turn of phrase. Thanks for understanding.

When we last visited our hero:

G-Tube: We spent the Summer trying to get the hang of this new tool in his arsenal. It got off to a very shaky start. I wasn't able to attend the training so learning it on my own felt like I was trying to rebuild an engine with the instruction manual in Mandarin. I don't speak Mandarin.
Once we got past that it took us two days to figure out that the beeping alarm every 10 minutes wasn't due to our lack of knowledge or skill but a malfunctioning pump. We ordered a replacement. It wouldn't hang on the pole correctly and kept flipping upside down. Herb macgyvered it so we made due for few more days for the replacements replacement.
Technical difficulties behind us Micah and I finally got it figured out but then the real trouble started. Gaining or even maintaining weight has been nearly impossible for Micah. So getting these nightly feedings figured out was vital. The formula the dieticians prescribed were making him sick. If we ran the pump at the rate needed to finish in less than, say, 10 hours it made him very sick to his stomach and he would have to turn it off early. It just wasn't working. By his six week follow up appointment he hadn't gained any weight. In fact he had lost some. The Dietician did some digging and found a different formula that claimed to easier on the stomach. Over the next several weeks the night feedings continued to improve and he got them up to the desired rate so they could run and finish while he slept. So that's the good news. The bad news... his queasiness during the day never got better. In fact it got worse over time. He often woke up sick to his stomach and his appetite continued to get worse to the point he would barely eat. It took us a while to figure out what we thought might be going on which brings us to...

Atypical Mycobacterium: Back in May a lab test revealed a diagnosis of an atypical mycobacterium.  We didn't know that that was either - so don't worry about it. We've since learned among other things it causes fevers, diarrhea, malabsorption and anorexia, and can disseminate to the bone marrow. But we also learned it would mean a serious attack of antibiotics were called for and a new specialist Dr. Winthrop from Infectious Disease at OHSU. We learned treatment involves a combination of antibiotics, including rifampicin, amikacin, ethambutol, and azithromycin over a long period of time - sometimes up to two years. It's not something to be taken lightly and it's not something he will be able to get rid of. At best it can be beaten back. Anyhow, Amikacin was administered intravenously twice daily through a PICC line for several months. It's pretty powerful stuff and we had to keep close watch on his kidneys and hearing which can be damaged during treatment. The other drugs are oral and he's been taking them for months clear up until last week. Meanwhile...


Hospital Stays:  There's been too many. It seems that Micah has spent more time in the hospital this year than he has at home. I've been trying to press in and learn all I can and be more available to Micah to help him manage his care but it constantly feels like we're juggling full glasses of water while trying to balance on a teeter-totter on shifting sand. Our family also has Grandma Gentert living with us who has Alzheimers and a three year old (Micah's little brother Corban) which means there isn't really enough of me to go around and I'm not able to help him directly as much as I wish I could. Micah's many returns to the hospital have meant even more antibiotics in addition to those needed to battle the Atypical Mycobacterium. His last hospital stay (prior to this present admission) put him on Cipro which can be pretty tough on the stomach. While Micah's appetite continued to wane it finally occurred to me that maybe all the drugs were eating up his stomach - literally. His primary lung doc agreed. We pulled him off of ALL the antibiotics to see how he would do. Within 24 hours I saw him eating and he seemed to have a little more energy. Withing 3 days he was able to go out and do something besides lay around the house. It felt like a little victory but we were apprehensive because we knew those drugs were necessary and we were a long way off from the end of the treatment plan. Within a week Micah started feeling horrible and last Thursday evening I had to take him to the ER and they admitted him.
He is doing better - they're throwing a lot at him right now. All the antibiotics are back - plus a couple for his current infection. They're working hard to help him gain weight since eating calories is a bit touch and go for him still. Prayers are welcomed. Matthew 18:19

It hasn't all been sickness, frustration and hospital stays. Some really excellent things have happened too. But that will have to wait for my next entry. Soon. I promise.

G-Tube Surgery

Micah had surgery to put in a feeding tube this morning.  It went very well.  We were reassured that it's a very routine  surgery (we knew that) and they do them all the time.  But of course it's not routine to us and Micah went in fairly anxious.
But now he's recovering back in his room with the aid of some morphine and after some time and rest (and more morphine) he'll try a tubefeeding later today.  The pain is still significant at this point.

He will have to stay for at least a couple of days to make sure everything is working like it's supposed to. Then they'll add a regular diet and make sure he does well with that before he can go home.

The look on his face during early recovery seemed to contain several emotions.  But mostly he seemed to be protecting his incision and looking upset like "this isn't what I thought it would be like".  I have to assume it would be a little freaky to have a port in your belly. Don't you?

I'm sure you have questions.  I did. Feel free to ask.